In the past, I've shared about Ivy's periodic fever syndrome. It has been quite a while since I've given an update.
During the spring we took Ivy to an infectious disease doctor, Dr Russ Osgathorpe. He is a wonderful pediatric specialist. When we went, Ivy had just finished an episode two days before. When he looked at her throat he saw the typical ulcers a child with PFAPA gets. He said that while we were talking about her, he was questioning if PFAPA was the right diagnosis. But after looking at her throat, he was 95% certain that that is what it is. He convinced us to try the prednisone treatment and said if she responded to the prednisone then he would be 100% confident in the diagnosis.
Three weeks later we got to give it a try. When she spikes to at least 101 degrees, we are to give her 1 tsp and then again 12 hours later. The several times we have given it to her, the fever breaks within the hour and doesn't return. Her fevers are less frequent now and with the prednisone, they never get above 101.
We are thrilled with our results.
During the Christmas break, she had an episode. We knew two days before the fever hit that she was starting. As you can see in the pictures below, her eyes start to get a sad looking and she drinks a ton of milk. This time, she enjoyed a root beer float.
Our next step is to get her tonsils and adenoids removed. There is an 80% chance of a cure- which seems like pretty good odds- especially now that we are comfortable with her diagnosis.
If you know of a child that has recurrent fevers that start to fit into a schedule of every 3-4 weeks, suggest they talk to their doctor about PFAPA. The doctor will run a few tests, to rule out anything else. The first test will be blood work measuring their sed rate during a fever and when they aren't fevering. They'll also run a urinalysis and culture to rule out a urinary tract infection. If their tonsils are affected, they'll run a strep test.
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3 thoughts and comments:
I'm pretty certain that my 3 yr old daughter has this. She's had the fevers for 2 yrs already & we are finally getting close to having some answers (I think). Her regular ped. just kept blowing us off until I finally demanded to see a specialist. We're taking her to an immunologist now and are in the process of awaiting lab results to rule out other possibilities. She has the mouth ulcers as well & now that I know about PFAPA and have been reading up on it - I feel it describes her syndrome well. How is your daughter now? Did you do the tonsillectomy?
My son has had pfapa for the past three years. We have seen all kinds of specialist. All but one doctor told us to wait it out, and avoid getting his tonsils out. "why bring mortality into a benign condition" was what I was told by one and I have never been able to get that out of my mind. He has the syndrome as I type, perhaps this will be the last month...
I so wish I had both of your email addresses to respond.
Ivy had her tonsils out and we went 5 months without a fever. We just had her first fever last week since the tonsillectomy. It is amazing how much she has changed since she had her tonsils out. She has more energy and she's enjoying everything more than she ever did before.
Was it a cure? It doesn't appear to be, but we've only had 1 fever in 5 months and it only lasted about 36 hours.
For us, the decision came down to was the risk of a fairly simple procedure worth it for the chance that she would not have to have a fever every month for the next 3-10 years. We opted for the risk, the procedure went smoothly and we're still glad we did it.
Sure, it is only an 80% chance of a cure. But depending on the source, a child won't grow out of PFAPA until they are 6 (the youngest I've heard) or going through puberty. If she outgrows it when she's 13, that is a really long time to have to deal with feeling like crap every 3 weeks for a week.
But, bottom line is that you have to do what feels right for you and your child.
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